Cancer patient Lisa Bonchek Adams rang in the New Year as an inpatient at Memorial Sloan-Kettering Cancer Center where, in between medical procedures, check-ins, conferences with oncologists and pain care specialists and visits from family, she exchanged direct messages on Twitter with one of her then-7,000 followers, a journalist named Emma Gilbey Keller. Emma asked Lisa about her social media activity -- her blogging and Tweeting regularly about the grueling impact of metastatic breast cancer and its treatment -- but neglected to mention that she was going to write an opinion piece about Lisa, and that she would quote from those direct messages in her article.
Pause here for all the journalists to gasp. And hold that outrage, because it matters.
On January 8, The Guardian ran Emma's article -- a shoddy piece of commentary suggesting that Lisa's social media habits constitute "TMI." Emma questioned her own intentions in following Lisa's Twitter feed and blog (both of which are clearly opt-in practices, of course), and conflated her own compulsion to read with Lisa's intentions in writing. Emma wondered if she was deriving some excitement (or other unsavory pleasure -- or, indeed, any pleasure at all) from reading about Lisa's struggle.
That's a thoughtful question to ask. In the age of reality television and radically new modes of information sharing, smart cultural observers will consider what happens to empathy when human beings learn intimate and heartbreaking things about one another, but never come close to meeting face-to-face. Can we suffer with someone we don't actually know?
But then something odd happened in the piece. Emma Keller flipped her internal debate to accuse Lisa's work of soliciting her discomfort. As she wrote, "I felt embarrassed at my voyeurism," but there is no voyeurism without exposure. Lisa was doing something dirty, something unseemly, with her writing.
Then she went on, in oddly contradictory fashion, to level accusations at Lisa's online habits:
She'll tell you all about her pain... but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate 'team', but there is no mention of the cost. She was enraged a few days ago when a couple of people turned up to visit her unannounced. She's living out loud online, but she wants her privacy in real life.
In order, then: Lisa Adams is too public with her suffering but too private about her husband and children's suffering; she fails to quantify (and presumably apologize for) the staggering cost of the oncologic care she's receiving in her local cancer center; and she dares to be upset when total strangers -- because, as Lisa tweeted, one was a total stranger -- show up at her hospital room door, because if you tweet about your treatment, then you must understand that basic rules of bodily privacy and security no longer apply to you.
Emma Keller's final suggestion was that it would likely be "more dignified" if Lisa's readers "turned away," to protect Lisa from her own terminal exhibitionism.
The piece was an amazing exhibit of journalism gone awry, in which the logic of a piece got away from its author. Emma did not like what reading about Lisa made her feel, so she determined that this must mean that there is something improper about what Lisa writes. Her thinking was so muddled that she invaded Lisa's privacy using direct messages -- the only form of messaging on Twitter that is, in fact, private, and must be opted into by both parties -- to ground a public article questioning the ethics of what she considers to be Lisa's violation of her own privacy.
The reaction online was swift and severe, and in the comments below her piece, Emma apologized for the misuse of her communications with Lisa. (Just today, the article was taken down for this failing.) An unusual correction to an unusual circumstance, a seasoned journalist allowing such a slipshod piece to run. For readers, there was the sense that something else was in play -- something that remained unexamined.
This morning, Emma Keller's husband, the New York Times columnist Bill Keller, provided the answer in an Op-Ed that took his wife's confused contribution and turned it cruel.
Through a combination of errors, shaming (and shameful) diction and cold insinuation, Bill Keller suggests that Lisa Adams should not have chosen to fight her cancer and that, in fact, by doing so, and by writing about her experience in public, she is casting shadows on all the people who died dignified deaths, contrasting her choices with those who "accept an inevitable fate with grace and courage."
Among the indignities: Keller writes that Lisa has two children, when her bio states she has three. (This correction has since been made.) In preparing the article, he asked both Lisa and Sloan Kettering to account for the costs of her treatment, including -- in a note of astonishingly gratuitous slander -- the price of the twice-weekly cuddles Lisa enjoys with a (volunteer) therapy dog. Citing a single, small lung cancer study, he suggests that Lisa's life might not be extended by her treatment, and asks her doctors to comment on this too (they demur). He mentions the hospital research fund that supporters have fed in Lisa's name as if to suggest that Sloan Kettering is banking on Lisa -- treating her not to extend her life with her children, but to rake in the donations generated by her Twitter feed.
I could go on. He attributes to her a militaristic stance she has openly and repeatedly disavowed. He describes a particularly tough tweet as having been "pecked," a dangerously gendered and demeaning verb that a writer like Keller knows better than to use. He characterizes her thoughtful critiques of the pink ribbon approach to breast cancer -- early detection means healthy boobies, forever, which is good for media but not so much for research -- as "potshots."
Why on earth would a NYT columnist choose to write about a woman with terminal cancer in this way? With inaccuracies so grave the piece seems to sidestep its subject altogether?
Five paragraphs in, Keller gives us the answer:
In October 2012 I wrote about my father-in-law's death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.
Emma Keller's father didn't have the platform Lisa Adams has written for herself. His struggle wasn't celebrated, it wasn't retweeted all over the world, it wasn't exalted by the hive mind as an example of life wanting life. Which of course means nothing about how nobly he lived or died. But his grieving daughter, reading about Lisa, felt things she did not want to feel. So she questioned whether Lisa's writing is appropriate. When she was roundly denounced for this, her husband jumped to her defense by arguing that Lisa is in fact the one passing judgment, that by fighting her cancer and writing about it, she, "implicitly, seems to peg patients like my father-in-law as failures."
Those of us who have been reading Lisa Bonchek Adams recognize that she is the last person to deride another cancer patient's treatment choices. She is painstakingly clear that her experience and opinions are hers alone. By accusing her of performing an unpleasant comparison between her life and that of thousands of other cancer patients, Bill Keller follows Emma Keller's lead and makes Lisa's life and work the problem -- rather than cancer itself, and the array of sorrows it can bring.
By contrast, as a writer, Lisa Adams contains her sadness, acknowledges her discomfort as her own and layers it with expressions of the full range of human experience: pleasure, comedy, aggravation, boredom, hope.
Behind every bully is a broken heart. We are all subject to loss and to its ability to turn us cold. What to do? Lisa Bonchek Adams has the last word: "Find a bit of beauty in the world today. Share it. If you can't find it, create it. Some days this may be hard to do. Persevere."
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